Wednesday, April 6, 2016

I've been thinking about how to describe to people how to best communicate with Cicily. Most importantly keep in mind Cicily is a 9 year old and thinks and learns like a typical 9 year old! Her brain just takes longer to send the message to her body to react. Our family recently saw the movie Zootopia. After we saw this scene, Chris and I looked at each other and said is that totally like Cicily to you too?! So I thought I would share the video so you can remember it when you're talking to Cicily. She LOVES when people say hi to her and talk with her!! Just keep in mind wait time. Talk to Cis and then wait a good 5-10 seconds (which feels like forever!) for her brain to tell her face to respond. It will happen, she loves to communicate. Just remember to be patient, think of the cute sloths, and wait.

New to Cicily's blog? Read some FAQs about Cicily:

Cicily at 8 years old

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.